CHILDREN WHO ARE CARERS

Who's looking after the city's caring children

Husband, father, housewife, nurse, counsellor  ... Jason Connell has played many roles in his family since his dad left and his mum became ill.
And all those roles mean from the age of around seven he has less chance to be who he would be in easier circumstances — just a son and brother.
Instead, at just 17, the Edinburgh teenager now has a decade of experience behind him which could rival that of a city social worker.
Suicide bids, terminal illness, childhood trauma — Jason has dealt with all these things almost single-handedly. And while he has felt terribly isolated at times he is far from alone. Thousands of young carers like Jason, some as young as five, are caring for parents and other relatives in the Capital.

This week their plight is being highlighted through Carers Week in a bid to give them more support and a better future.
One of the numerous health problems which Jason's chronically sick 37-year-old mum Annie suffers from is a borderline personality disorder, which makes her paranoid about strangers. She has also become increasingly estranged from family members.
As a result Jason is left to shoulder the responsibility for his mum's welfare and that of his younger sister Tamara virtually alone.
He seems matter of fact about his life but the one thing he has struggled to deal with, however, is the lack of support from the education system, which he says resulted in him being “flung out” of Craigroyston High School just before Christmas last year when his home life took its toll on his studies.
When he told his mum what had happened she tried to kill herself again. He says: “In fifth year my mum had a bad year and I was off a lot caring for her, sometimes three or four days at a time depending on her state of health. When you added it up it could have been well over a month each term.

“But I always told my guidance teacher when I was off and why. I only managed to do a couple of exams in fifth year but before I started sixth year my mum was having a good stretch and I thought I would not be off so much. But then she had another bad year and I was off a lot again.
“I was halfway through sixth year when they said they would not let me stay on.
“I was very angry at the time and quite hurt because I was really trying.
“I had a plan to finish sixth year to make it a lot easier for me to get into college. When I was flung out I did not know what to do. I was in shock.”
Six months on, he is more forgiving of his former school, but he firmly believes other young carers should be helped to continue their education.
Mum Annie still feels both angry and guilty that her son was, in her view, penalised for being her carer.

She says: “Going to school was a lifeline for Jason. It was the only social contact with friends his age he got. Never mind his education, it was a break from me.
“I cannot be left alone if I am feeling suicidal, he has to keep getting up through the night to check on me.”
As his mum talks about her suicidal tendencies — she made her latest attempt to hang herself just days ago — Jason simply shrugs and smiles.
He is also used making sure she takes all the medication she needs for her various conditions, and cleaning up after her when she soils herself.
Sitting opposite his mum he listens quietly as she describes her health problems, rattling off a list of conditions as if she were reading out loud from a medical encyclopedia: arthritis, asthma, duplex kidneys, incontinence, lupus, multiple sclerosis  ...

“Just the complete package,” Jason says, smiling wryly.

When Tamara, now nine, was born, Jason automatically began playing the role of father as well as brother. And when his grandfather moved into their home soon afterwards, following a stroke, Jason nursed him until he died.
Recalling how the balance of care swung from mother to child, he says simply: “My mum has been disabled since I was very young and my dad went away when I was 18 months (old).
“I started caring for my mum, grandfather and my wee sister at a young age. There was no-one else to do it.”
He adds: “When my grandad moved in after his stroke I would do things like make him cups of tea, help him when he had problems getting in and out of bath, take him back and forward to the toilet.
“I never found caring for him difficult.”
His grandfather's death about four years later was a different matter, but taking care of his mum left him little time for grief.

He says: “My mum took it a lot worse. I grieved in my own way but there was more responsibility to deal with so I couldn't just sit and mourn. Mum became suicidal and was taken into hospital. That was the hardest time, trying to keep my sister happy while mum was in hospital.”
Children and teenagers in Jason's position often find making and keeping friends difficult.
Jason is no exception, but he counts himself relatively lucky because he was able to visit his uncle at weekends and meet friends there.
A chance encounter later put him in touch with the Edinburgh Young Carers Project, which gives children and teenagers like Jason a break and a chance to meet people in a similar position.
“I've been going there since I was 12 or 13 and I still go. It is really good. I have made a few good friends there who I'm still in touch with.
“At school I only told three of my close friends about my situation.
“But at the young carers group everyone is in the same boat. I think it's important that people in my position know they are not isolated. If you talk to people and socialise with people in the same position as you it makes it a lot easier.”

Through the group Jason has been away on breaks trying new activities like quad-biking and archery. If all goes to plan he and his friends in the group will be off to France for a trip later this summer, giving all of them another much-needed break.
When he gets back, Jason will return to caring for his mum and sister.
But he has high hopes that the problems which set him back in his studies at school will now stand him in good stead for his chosen career: “The young carers group has referred me to a social work course called Options Plus, which helps people with difficulties.
“I hope to start it in September and go on to do a social work degree at university.”
A spokeswoman for Edinburgh City Council's education department says the city cannot comment on individual cases.
However, she adds: “We have procedures in place to support poor attendances, we have procedures in place to support young carers and we have procedures in place to support children who want to stay on at school who have additional needs.”

A heavy burden that takes its toll on young shoulders

There are believed to be around 5000 children and teenagers — some as young as five years old — looking after relatives in Edinburgh who are unable to look after themselves.
The family members they care for include an alcoholic mother, a terminally-ill grandmother and a hyperactive younger brother.
The young carers' work can include giving their sick relation vital medication, washing and dressing them, doing the shopping and cooking for the family.
Because of the social stigma surrounding many of these illnesses and conditions, the fear of bullying and ignorance of the fact that they are not alone, these young carers often receive little help from professional agencies.
Carers Week this week is an attempt to raise public awareness of the plight of these children and young people.
It follows The Young Carers Seminar in Edinburgh last week which was organised by The Princess Royal Trust for Carers to highlight the massive need for support.
The Edinburgh Young Carers Project is one of the few organisations offering help in the city, providing a range of services, including one to one support for some 80 young carers and group activities such as weekend breaks amongst other support services to another 600.

Rob Warren, project director and one of the speakers at last week's seminar, says: “The national census identified 920 young carers in Edinburgh but that was based on self-selection. I think everyone accepts that the number is closer to 5000.

“It is clear that much more is needed to help them.”

Contact web: www.youngcarers.org.uk

Julia Horton
14 June 2005

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